Dead is not better than disabled

With the current spotlight on street violence and warnings about the potential consequence of acquired disability, Dr George Taleporos is concerned about the way disability is being portrayed by the media as a fate worse than death.

Following the one punch attack of Daniel Christie on New Year's Eve 2013, media reports appeared about the consequences of street violence and acquired disability. In a recent story published in The Age, neurosurgeon Professor Andrew Kaye spoke about disability as a fate "far worse than death".

The impact that this kind of coverage may be having on societal perceptions of disability concerns me.

In the article, Professor Andrew Kaye says, "Frequently young men will either die and that's the best of it for them ... Or they're lying in bed with no function at all, not able to communicate, with no function of their bowel or bladder, not being able to eat, being fed by tubes."

In The Age's online video interview with Professor Kaye, he adds, "It's just a living hell. Living hell for the patient. Living hell for the family. That's far, far worse than death. That's like a death every day for the rest of their lives. It is the worst thing you can imagine, but it's so bad most people can't imagine it, and certainly most young people can't imagine it unless they've seen it."

The use of fear is an effective tool for instigating behaviour change, the classic example of this being the Grim Reaper campaign of the 1980s. While initially praised for its impact on raising awareness about safe sex, it is now blamed for creating fear and prejudice against gay men.

It's been my experience that the media has also done a damn good job of creating fear of disability. I believe stories arguing for the legalisation of euthanasia and about the impact of drunk driving or street violence make disability look as horrid as possible to get their point across.

For instance, last year's coverage of the Tasmanian Assisted Dying Bill relied heavily on negative representations of disability to build a case in favour of the bill. In an ABC 7.30 report from last October, a Queensland woman with motor neurone disease said, "Well, let's put it this way. I can use my left hand, my right hand is just about useless. If I can't use my left hand to wipe my bottom, then I can do nothing else for myself. That means someone has to do everything for me. I couldn't bear to live like that."

As someone who has never wiped his own bum, I can say that the disability tragedy story perpetuated by the media is just one perspective. While it serves to raise awareness of the challenges presented by disability, as well as the importance of thinking about the consequences of street violence, it also comes at a cost.

Every day people are diagnosed with disabilities, parents are informed that their child has a genetic disease, and people wake up from comas to find that they can't feel their legs. Their perceptions of disability will influence what happens next.

Last November, American Tim Bowers woke up after a hunting accident and was told by doctors that he was paralysed from the shoulders down and dependent on a ventilator to breathe. Tim chose to end his life rather than live with a disability. He believed that disability was a fate worse than death.

While the media continues to perpetuate fear of disability, community attitudes towards us will remain one of the most significant challenges that we face. People tend to hide away and reject what they are afraid of. This leads to discrimination and marginalisation, which is a common experience of people with disabilities, as the Australian Government's Shut Out report from 2009 shows.

Disability is a multi-dimensional experience. I find myself fighting the system every other day. On the other hand, I get to see the world from a different perspective, I feel like I have a meaningful life full of unique experiences, not to mention scoring awesome parking spots.

I fully support a campaign to educate young people about the consequences of excessive alcohol consumption and street violence. However, the campaign must not be based on the message that you are better dead than disabled.

Dr George Taleporos is a disability rights advocate with expertise in access and equity and disability service reform. He has a physical disability, a Ph.D. in Psychology and an Honours degree in Sociology. You can find him as @drgeorgethecrip on Twitter.

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GREG :

22 Feb 2014 5:18:46pm

Being a nurse for most of my life and having Polio as a child, I am fed up with doctors playing God. Life is so precious and I would spend all my life preventing them from dying alone. If I had Polio now and a doctor said 'Hey lets put him to death because he wont mount to nothing', I would tell you to rack off. I look back and see what I have achieved with the Polio. The doctors in the 60's found a surgical treatment that helped me to walk, a physio who was trained at the School of therapies that Elizabeth Marshal or Elizabeth Kenny started, she was the one who found a cure for Polio in Australia, she was an Australian Nurse, helped me to walk again, I became a nurse and now I am doing my Cert 4 in Disability at 60, so I can work with those who are disabled. For me I would much rather be alive than dead. I know it is hard for the disabled person, having to depend on being cleaned and wiped and dressed by others, but you ask any of them and they will prefer to live than be murdered.

Bruno :

13 Feb 2014 7:11:51pm

THIS DOCTOR HAS NO IDEA. PERIOD. Is he disabled? If he is not then ignore him. I respect his qualifications and years of study, insight and experience but they mean little or nothing to me. Unless you have a disability, especially a severe disability you have no idea, or little idea. Unless you live this life every day I do not care how qualified you are you simply do not know and you should not profess to know. Do not preach to me! Just like I have no idea what his life is like! Life with a disability is a personal opinion. If the doctor wants to do something I suggest he actually does something about the disability not the politics.

Nic Crovaix :

09 Feb 2014 5:47:45pm

There is room in society for all kinds of people. For the disabled who have found ways to cope and be happy despite their restrictions. And for those who can’t cope or simply don’t want to, whether disabled or not. It is wrongheaded that some in the disabled community want to foist their paranoia about voluntary euthanasia on everybody else. I say live and let live. Or live and let others die (if they want to). It’s true that your average “healthy” person thinks being severely disabled is a fate worse than death, but so what? We live in a pluralistic society, remember, where everyone is entitled to an opinion and no one is forcing anyone to kill themselves. If someone offers you a choice you don’t like, you say “no thanks”. Are these people saying the choice to have assistance to die should not be offered to anyone under any circumstances? Apparently so. In their zeal to keep us all alert and alarmed, groups like Not Dead Yet (who often bring up the Nazis) are acting a bit like those very people.

NickW :

07 Feb 2014 2:14:51pm

Great article, fantastic to see someone countering the "I would prefer to be dead argument"

MS has taken my ability to walk, to work, to see properly, constantly fatigeged, need help to toilet, makes food taste teriable, shaking, taking a raft of meds all with serious side affect one including death at greater than 1 in a thousand at least. Last but not least in daily constant pain. All for more than 20 years. To be honest hearing someone who is at the start of their diagnosis or disability and opts for suicide (lets call it what it is) needs help to come to terms with the way life changes not help loading the gun.

Phil E :

06 Feb 2014 12:11:01pm

Media power to influence opinion is very strong. The fifth estate is more than research/investigation and writing. The phrase, "a fate worse than death" has become a handy piece of mental furniture for commentary without thought, or maybe it's a distancing measure to separate the commentator from the situation of disability. Used repeatedly it migrates via media and conversation through the population. Interactions transacted via media can all to easily become careless as some FB users show from time to time.

Moral and ethical dimensions can be lost for a variety of reasons, including an audience's slow response in identifying and critically evaluating errors, not to mention broader cultural shrinkage of those dimensions.

It's worth noting that many folk have a transient experience of disability based on being in hospital for treatment or surgery at some time in their lives. Remembering this might temper commentary.

Ultimately disability will affect everyone as we enter the final phase of life in this world leading to death, no matter how long or short the duration is. It behoves us all to practise merciful and kind thought and actions towards others.

Ben H :

06 Feb 2014 8:18:00am

Well said George, I thoroughly agree.Death and disability are two totally different things, although they can both result from the same cause or not.What is more important if someone is unfortunate enough to find themselves disabled later in life - whether by accident, misadventure or assault, is that those left to care for the individual show care, respect, dignity and compassion, just as they would expect to have shown to them without a disability.

Too often disability goes hand in hand with loss of dignity, respect, concern, and interest from the general population, other than the usual throw away line of "but for the grace of god", or "at least it's not me".I think that anyone who says death is worse than disability should get off their high horse and get to know someone with a disability, rather than just tarring "them" all with the same brush, disregarding them as other, or considering them inferior.

No one thinks that way about Stephen Hawking, and I'd like to think that everyone with a disability could be judged on who they are and what they can do, rather than what they can't or be seen as a burden to the community.

Disability isn't the problem here, attitude is, and only by exposure, education and acceptance can we find equality in the community.

Just because someone has a visible disability doesn't make them less worthy of respect than someone who seem normal; there are plenty out there like me who have an invisible disability, every bit as debilitating as some physical impairments, but that's a whole other story.

Livia :

06 Feb 2014 7:27:35am

Based on the quote from the doctor, he was not saying that any disability is worse that death. I'm sure he's not going to tell a person who is blind or an amputee that their life is not worth living. The doctor was talking about people who can't move, eat, or communicate. Anyone who thinks that is a worthwhile life is speaking from an ideological/religious perspective.

Tim Bowers had the right to make the decision he did, just as he had the right to choose to stay alive.

Those of us who promote the right of individuals to choose to end their lives do not deserve to be labelled fanatics.

As it happens I've campaigned for rights for people with disabilities for about 4 decades. But I'm also pro choice when it comes to euthanasia. Some people think it's worth living no matter what they suffer. Other people don't. We are all different. At the moment, here in Australia, it's the anti euthanasia side who get to dictate to everyone else.

Jake :

05 Feb 2014 10:53:13pm

Being someone that is legally considered disabled and a person that works with seriously disabled people I get to see the extremes of the term 'disabled'. While some people are proud of their disability others do not even have the mental ability to know what proud means, this seems to be the problem with this issue in that the term disabled is applied to everything from a relative inconvenience to a complete vegetative state. I would love to think that everyone that is considered disabled is given every chance to lead a happy and fulfilled life, but in some cases I have had to wonder in what world we would make a person live when it would be considered cruelty to not put down an animal in a similar situation.

Rev Christian Fandrich :

Your reference to those "building a case in favour of" euthanasia legislation, reminds me of some sage advice from the martyred German Lutheran pastor and philosopher Dietrich Bonhoeffer, in his book "Ethics". Up until 1941 the Nazi dictatorship killed some 60,000 Germans with intellectual and physical disabilities, and psychiatric illness in their euthanasia program. In their propaganda they claimed it was the "merciful" thing to do for these "poor defectives". He writes:

"But before any particular aspects of the problem can be examined, it is necessary to state, as a matter of principle, that the decision about the right to destroy human live can never be based upon the concurrence of a number of different contributory factors. Either an argument is cogent enough in itself to bring about this decision, or else it is not cogent at all, and if this is the case, no number of good additional reasons can ever justify such a decision. The destruction of the life of another may be undertaken only on the basis of an unconditional necessity; when this necessity is present, then the killing must be performed, no matter how numerous or how good the reasons which weight against it. But the taking of the life of another must never be merely one possibility among other possibilities, even though it may be an extremely well-founded possibility. If there is even the slightest responsible possibility of allowing others to remain alive, then the destruction of their lives would be arbitrary killing, murder. Killing and keeping alive are never of equal value in the taking of this decision; the sparing of life has incomparably higher claim than killing can have. Life may invoke all possible reasons in its cause; but only one single reason can be a valid reason for killing. To fail to bear this in minds is to undo the work of the Creator and Preserver of life Himself. It follows from this that to support the rightfulness of euthanasia with a number of essentially different arguments is to put oneself in the wrong from the outset by admitting indirectly that no single absolutely cogent argument exists (pages 135-136)."

A life and death decision is so final that only one reason can or should stand. One cannot, and dare not "build a case in favour" to kill a person.

Clancy :

05 Feb 2014 4:15:18pm

Great article. I guess this is one of those things that varies with the individual. and their circumstances. I can understand why for a physically active person the idea of living with an aquired severe disability is too much to cope with and death seems preferable. But life is precious, and if people are adaptable and have adequate support they can achieve amazing things. My mother had polio as a baby and never walked, but managed a full life (five kids, 4 'husbands' and a couple of short-term partners who didn't make the grade, drove her own car, etc). She couldn't abide pity and although clearly found being stuck in a wheelchair to be often frustrating, she got on with things and found her life to be very much worth living. I coun't myself lucky to have had such a brilliant example around me as I was growing up.

Todd Winther :

For every minute that I can remember I have wished that my disability did not exist.

These are not popular opinions on this type of forum. I simply point them out to suggest that while people that take pride in their disability may not understand this, it does not mean that these feelings should be devalued or minimised. Quite frankly, even though I understand it academically, I cannot fathom or comprehend on an emotional level why people take pride in their disability.

Particularly on this sort of topic, no emotional response should be criticised.

Joan Hume :

03 Feb 2014 4:00:02pm

Terrific article George. Promoting fear of disability as a fate worse than death encourages euthanasia fanatics to continue pushing their agenda through state legislation. Our lives are truly at risk from this attitude. Joan Hume

Hank :

03 Feb 2014 2:52:03pm

George, Quite honestly, I find most of your comments disturbing! I became "disabled" at age 35 due to ABI from severe asthma attack. I am disturbed that neurosurgeon Professor Andrew Kaye spoke about disability as a fate "far worse than death". I can state that is DEFINITELY NOT!He goes on to say "The impact that this kind of coverage may be having on societal perceptions of disability concerns me".I also believe stories arguing for the legislation of euthanasia IN CERTAIN CIRCUMSTANCES, but disability is not amongst that given the assistance available these days.There is a lot of equipment to assist.

Sarah Barton :

03 Feb 2014 2:29:40pm

I couldn't agree more George. Over the past 30 years I've been on my own personal journey from believing that death was better than disability because I never saw or heard anyone with a disability and had no comprehension of what it meant to live with a disability. Now most of my favourite people have a disability and I can see that we all only have one life and we have to make the most of what we've got - whatever it might be. I guess the message is that with the right support life with a disability can be enjoyable, meaningful and definitely worth living.

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